Notes on the occasion of Black [Medical] History Month
As a first-year medical resident, one of your jobs is to sit down with newly admitted patients for an end-of-life discussion, including whether they would want to be resuscitated if their heart stopped.
It seems obvious that you would – after all, who would rather die than be shocked back to life? – but suffice it to say that unless you are young and otherwise healthy, you probably wouldn’t.
Resuscitation resembles nothing more than a violent assault on the patient – complete with tubes, machines, and cracked ribs from chest compressions – and, contrary to what we see on TV, only a minority of patients survive it, and of those who do, most never regain normal neurological function.
So while it may be appropriate for some, cardiac resuscitation is not the right choice for everyone, and in many cases the rational and humane decision – the one the patient actually wants when they fully understand the ramifications – is to be DNR: Do Not Resuscitate.
One night during my internship, I went into the room to have a DNR discussion with a patient and her family. She was an elderly Black woman with stage four esophageal cancer, whom I had admitted earlier with a stroke due to brain metastasis.
If ever a patient was a candidate for DNR, she was that patient. I felt that to perform cardiac resuscitation on this patient in the event that she “coded” would have verged on unethical, and I was confident that I could easily explain why to the patient and her family.
Boy, was I wrong.
However hard I tried, I could not seem to get my points across. It felt as though whatever I said was met with a wall of resistance and suspicion. Was I really proposing not to help her? To just let her die? Was this the hospital trying to save money? Did I say this to all my patients? If not, why had I singled them out?
It turns out that this was not an atypical experience, especially with Black patients. In fact, the rate of life-prolonging end-of-life care, including ICU admissions, feeding tubes, and resuscitation, is almost twice as high among Blacks, and not to their advantage.
There are many reasons for this disparity, but one in particular, which I did not fully appreciate at the time, is the distrust with which many in the Black community view the medical establishment. There are good reasons for this distrust, which has its roots in a shared cultural and historical experience.
Among the mountain of facts that I learned in the course of my medical training, here are a few that were never taught in class.
In 1932, the U.S. Public Health Service began a study to determine the long-term effects of syphilis on the human body. They recruited 600 Black men from Tuskegee, Alabama, which had the highest rate of this disease in the nation at the time. These men were enrolled with the promise of free medical care, free lunches, and free burials, but were never told the true purpose of the study.
In 1946, when penicillin was discovered to cure syphilis, the treatment was made available to none of the men with syphilis in the study.
Year after year – for a biblical forty years, in fact, up until 1972, when the AP broke the story – these men were seen and treated by doctors for everything from sore throats to heart attacks to annual check ups, without ever being informed about or treated for the deadly and contagious – yet curable – disease that their doctors knew they had.
Another fact: J. Marion Sims, known as the father of modern gynecology, lived in the mid-19th century in the antebellum South. He is famous for inventing the vaginal speculum, as well as for many surgical techniques including the repair of vesicovaginal fistulas, a socially ostracizing form of incontinence which was a common complication of childbirth at the time.
He is perhaps less well known for having developed these techniques on enslaved women without the use of anesthesia and without their consent.
Another fact that has gained cultural notoriety but that we never learned about in medical school is the story of the exploitation of Henrietta Lacks, whose cancer cells, obtained from a biopsy of her cervical cancer in 1951, are the first “immortal” cells ever grown in cell culture.
The HeLa cell line has been used in medical research and development ever since – generating billions of dollars in revenue and contributing to advances in a wide array of fields – including the development of Covid vaccines – but neither Lacks nor her family ever gave consent or received compensation for their use.
In 1972, when the Tuskegee story broke, a senator in charge of the PHS budget called it “a moral and ethical nightmare.” “It’s incredible to me,” he said, “that such a thing could ever have happened.”
The fact is that atrocities like the Tuskegee Syphilis Study or Sims’ use of enslaved women for medical experiments never happen in a vacuum. They are remarkable not only because they happened, but also because they could not have happened as isolated events.
Events like these can only grow from fertile soil, implicating a cultural foundation of racism that expressed itself in medicine in many different ways – some infamous, some mundane – but all tainting the experience of generations of Black Americans with medicine on a common and pervasive scale.
Seen from this perspective, who can really be surprised that an elderly Black woman and her family might approach a DNR discussion with suspicion and distrust?
Of course the problem is not limited to end-of-life care. Distrust of the medical establishment plays at least a role in other areas of racial disparity in medicine as well. Two examples that come to mind are the lack of racial mix in clinical trials and Covid vaccine hesitancy.
But back to the story: in the end, I failed to achieve my objective, and my patient was not made DNR. For that hospitalization it turned out to be a moot point, because her heart never stopped. I hope that when it eventually did she was allowed to go peacefully.
The moral is that had I known a little more history, I might have approached the discussion differently, and perhaps have been of better service to the patient. Which is one reason why I believe that medicine belongs as much to the humanities as it does to the sciences.
My brain was full of everything that I, my teachers, and generations of medical educators, thought I needed to know to be a doctor; but there were still some pretty big gaps.
February is Black History month, which seems like a good time to consider the idea of integrating aspects of Black history into professional and vocational training across the board.
Where would that fit into what is already so many years of premedical, medical, and postgraduate medical training? Innovative educators are trying to figure that out and I applaud their efforts.
One thing is for sure: when it came to that DNR discussion with my patient, a few hours of Black history would have been a lot more helpful than a whole year of Organic Chemistry.